Tuesday, 11 October 2016

PACE and a plea for timely strategic action in the ME community

ME (Myalgic Encephalomyelitis) has long been recognised as a serious physical/neurological illness by the World Health Organisation, International Classification of Diseases, Tenth Revision: ICD-10-G93.3[1]. The WHO ICD-10 separates ME from idiopathic/psychiatric fatigue syndrome, which it lists in section F.48: ICD-10-F.48. The WHO have emphatically stated that different disease classifications should not be conflated. If only the medical establishment and media would properly recognise this fact a lot of trouble, suffering, money and litigation would have been saved.

Unfortunately, the controversy over the 'PACE trial'[2] recommendations of cognitive behavioural therapy and graded exercise therapy (CBT/GET) for "CFS/ME" patients, based upon the alleged fear of activity/deconditioning hypotheses, continues. If there were any justice, Ireland's Tom Kindlon and ME activist associates around the world would be given an official public honour in the new year for services to the sick and vulnerable. Kindlon et al have exposed what has been publicly called the PACE trial "fraud" and "scientific misconduct"[3]. Alas, in my experience of campaigning for ME justice since 2004, no such justice is ever GIVEN by the medical and political establishment in ME circles, it has to be FOUGHT for. The recent forced release of raw PACE data is a case in point. I therefore fear that the recent ME community "Plea for decency to White, Chalder and Sharpe"[4], requesting retraction of their published PACE results, is akin to a mouse begging a cat to stop chasing it. I do hope that I am proved wrong, but I seriously doubt that there will be an early retraction of the PACE trial paper in the Lancet by the authors. Moreover, the controversial, and internationally influential, UK NICE Clinical Guideline 53 on "CFS/ME"[5] recommended CBT/GET treatments for NHS patients long before the PACE study was even published[6]. It is unlikely therefore that NICE CG 53 will be retracted or amended on the basis of the unlikely event of said PACE trial paper being withdrawn from the Lancet.

A recent ME community forum posting stated that "Protests and petitions shouldn't be [the] only activism tools, fundraising for biomedical research [is] important"[7]. I agree, but we also need to be realistic about the fact that biomedical ME research is starved of funds as an ongoing act of intergovernmental POLITICAL POLICY. Policy that is informed by an insurance-industry-linked psychiatric lobby[8]. Taxpayers who fall ill with ME have a right to expect genuine science-based public health/welfare policy, and a right to expect that a fair proportion of government medical research funds are allocated to biomedical ME studies. Official ME political policy needs to be changed. Political activism is therefore absolutely vital to securing funding for biomedical research and securing genuine science-based health policy. Activism therefore has to be a priority.

Mere blogs and protests will not however achieve ME justice on their own. I am therefore deeply concerned that a strategic opportunity in the wake of the recent raw PACE data release may be missed. It is absolutely imperative in my view, that the ME community now urgently works to persuade a number of respected and well-known specialist biomedical ME clinicians/researchers from various countries, along with non-specialist academics who have recently taken an interest in PACE, to collaborate to produce a joint scientific overview paper on ME/PACE. They should then attempt to publish the paper in a respected peer-reviewed journal. Such a paper must do two things: firstly, it should draw attention to the flawed PACE trial methodology and to the flaws in CBT/GET for ME generally; secondly, it should set out an updated overview of existing biomedical evidence, indicating known disease processes and setting out WHY CBT/GET may be contraindicated as treatments (as earlier authors have attempted to do[9]).

A PACE-critique-inclusive peer-reviewed paper is now timely and would be extremely useful. It could be properly cited when interacting with politicians, medical/research professionals, media and lawyers. I reiterate: blogs, supplicatory letters and protests are not enough. Citing a blog will never command the authority that citing a scientific paper will. True, a peer-reviewed paper (as described) will not GUARANTEE international ME justice, but I believe I can guarantee that justice will not come without such a paper. In my view the ME community needs to help assemble a clinical and academic collaboration and encourage them to publish on PACE etc as a matter of strategic urgency. Such a collaboration occurred with the setting up of the International Consensus Panel under Dr Bruce Carruthers et al, leading to publication of the International Consensus Criteria (ICC) in 2011[10]. The time is now ripe for a similar action on PACE.

About Me

I am a Christian, saved by grace alone through faith alone. I have had the neuroimmune disorder ME, Myalgic Encephalomyelitis, since 1991. From North Somerset, now in N. Ireland. Please see my website for further information about ME.